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CDC Multi-site Study - An interview with Beth Unger

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 31, 2014.

  1. Bob

    Bob

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    Here are some extracts from the interview that address some of the issues we've been discussing in this thread...

    SOC likes this.
  2. Gemini

    Gemini Senior Member

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    Dr. Unger in her presentation Dec 2, 2013 about the CDC multi-site study is reported to have said, "Results need to be combined with biomarkers." [Ref. Dr. Ros Vallings, NCNED Centre Opening Ceremony]

    A question to ask Dr. Unger on her upcoming Feb 25, 2014 conference call is: "Which biomarkers & when?"

    I hope Dr. Unger was taking notes during this Ceremony when Sharni Hardcastle(Gold Coast AUS) described researchers making home visits to collect blood samples from severely ill patients. It was reported: "Follow-up with both moderately and severely ill patients showed that NK activity in the severe remained significantly far worse...She [Hardcastle] stresses the importance of looking at severity both clinically and in the laboratory."

    Speaking of biomarkers, anyone know the status of Dr. Tate's work on developing a diagnostic test?
    NK17 and Ember like this.
  3. SOC

    SOC Moderator and Senior Member

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    In other illnesses, the early research cohorts were the most severely afflicted. The thinking is that it would be easier to detect the markers of the illness in those with the worst illness. (Duh!) HIV, for example, was first detected in the most severely ill AIDS patients, not the HIV-positive people who were not yet severely ill.

    I'm not sure why so many people (I include the CDC as a whole in this group) insist on doing ME/CFS research with patients at the milder end of the illness -- people who are still working and those who can easily get to testing locations.

    I'm 100% behind a clinical definition that (for the time being) is quite broad. We really don't know what the earliest symptoms of this illness are, and even the mild cases need treatment.

    What I'm NOT behind is a research definition that includes mild patients but not severe ones. That's likely to result in ambiguous research results at best, and completely incorrect ones at worst. We are already victims of this problem.

    If the CDC is focused only on getting a broad clinical perspective on the illness -- one that doesn't miss anyone with the illness -- then they could be headed in the right direction. Their grouping they're calling "CFS" may well include people who don't actually have the illness, but it won't leave out people who are early in the illness or have atypical presentations.

    Sharni Hardcastle's report mentioned by Gemini above exemplifies the importance of using severe patients in a research cohort. We cannot allow the CDC or anyone else to blur the line between a clinical cohort which can be broad and inclusive, and a research cohort which should be tight and limited. We critically need good research and that means a clear, unambiguous sample set.
    peggy-sue, NK17, Cheshire and 2 others like this.
  4. biophile

    biophile Places I'd rather be.

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    The best options? Errr, what about the 2-day CPET test and the Lights' post-exercise mRNA test!!!

    The word "best" should not be tossed around lightly. Her statement should have read like this:

    peggy-sue, Valentijn and Bob like this.
  5. Kati

    Kati Patient in training

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    @SOC I agree with you to a certain degree. It makes sense.

    From my point of view, the physicians that see ME patients see the ones who can make it to their offices. And often time, these patients, like me travel thousands of miles to see them. Of course the cohort will include only patients who can afford the testing since not very much is covered by insurance, for those who are insured. Moreover, the patients need to be able to complete the questionnaires. They're a lot of work.

    I believe that the physicians involved in the CDC study are doing their very best with what they get- and I believe that Dr Lapp is recruiting very severe patients for a study.

    I think the government will try to stall things for as long as they can. It's convenient and then patients are not very responsive due to the aspects of our illness.

    That said, I am one patient who belongs in the CDC cohort- for better or for worse. I was supposed to have an exercise test either in the fall or in February and this is not materializing as of yet. Why, I don't know but suspect that patients who have made noise demanding a 2 days CPET would be a reasonable explanation.

    If I am being summoned for a 1 day test it was in my intention to request to make it a 2 day test and pay the difference- as this would provide further proof of disability.
  6. aimossy

    aimossy Senior Member

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    @Gemini Hi, we are hopefully to be updated in march...I will make sure updates go on the thread when we get them.:)
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  7. Firestormm

    Firestormm Guest

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    @Kati

    Are you suggesting that protest about not using the 2-Day test is actually delaying a major research initiative? Or perhaps I have misunderstood your meaning here. Might be worth you checking with CDC to see they haven't forgotten about you. Thanks for taking part. It must be very costly but hopefully worthwhile in the long run :)
    peggy-sue likes this.
  8. Kati

    Kati Patient in training

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    i am not suggesting anything, I'm just saying that the exercise test was supposed to be either November or February and right now there is no clear plan. i don't know why. But I'm coming down anyways for a visit with the good doctors :-D.
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  9. Wally

    Wally Senior Member

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    A couple of reasons that the testing can be delayed would be as follows: 1) recruitment of test subjects not yet complete, 2) testing guidelines not finalized and/or 3) funding not yet received.

    May be worth asking if any or the items identified above could be delaying the start of testing. I would think item no. 1 would be something each site would be tasked to do, but the CDC might be privy to where the recruitment process currently stands. Item No. 2 would be a question for CDC - who has designed the testing criteria and is this complete? Item No. 3 would again be something to ask the CDC because the funding would come out of their/HHS budget.
  10. Bob

    Bob

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    The delay might simply be a case of refining the methodology and finalising the logistics.
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  11. Kati

    Kati Patient in training

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    They need to make it clear, what are they testing for, what are they looking for and could they not collect bloodafter in order to confirm post exertional biomarkers. They are better getting it right because we all know what exercise costs the patients.
  12. Ember

    Ember Senior Member

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    Are you aware of how forcefully Dr. Under has been urged already, both during CFSAC meetings and in letters (here and here), to build on the existing science and incorporate credible biomarker candidates into her study? The empress has no clothes—as her flimsy veil of excuses shows.

    Even when publicly exposed, Dr. Unger doesn't commit to redressing her failures to act. She was asked at the IOM meeting whether she has been able to do an analysis of the different case definitions yet on her data set, and she replied:
    Dr. Klimas followed up by pointing out that the DSQ was included among the study's questionnaires and that “Lenny Jason has an algorithm on an Excel Spreadsheet that we could use to at least look at it in that way, just to compare Fukuda with 2003 Canadian.” But Dr. Unger continued to prevaricate: “Yes, but, but, yeah, um, it's, it's still, I think, requires some interpretation and discussion. But yes, the data is there.”

    Dr. Ungers' evasions suggest to me an intellectual dishonesty, the consequences of which should be considered a crime. How long does she get to play out her slow progressive reveal before being properly called to account?
    Last edited: Feb 8, 2014
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  13. Ember

    Ember Senior Member

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    You're 100% behind a broad clinical definition for which illness? If ME were to be included in a broad CFS clinical definition, would exercise be prescribed or not?

    The ICC allows for early diagnosis without any six-month wait period.

    Disease definitions can be relaxed or tightened depending on whether they're used clinically or in research. Are you opposed to the ICC because of its being both a clinical and a research definition?
  14. alex3619

    alex3619 Senior Member

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    In any case the CDC is working toward a new research definition, if my understanding is correct. That will need to be a stronger definition than a clinical one.
    SOC likes this.
  15. Ember

    Ember Senior Member

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    Dr. Unger writes, "The data collected in this study will be useful in evaluating current and proposed diagnostic criteria, but creating new CFS case definition criteria is not a goal.... A new definition of CFS is not the objective of this study."
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  16. Bob

    Bob

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    Re the 48 hour post-exertional cognitive tests, the results may depend on the type of test used.
    If my memory serves me correctly, some some studies have shown cognitive deficits in ME patients only (or mainly) in processing speed during complex tasks.
    So if such a test is not included in the CDC study, then the cognitive test results might not have helpful results.
    peggy-sue, aimossy and Firestormm like this.
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Can't speak for Aussies, but the US govt is not 'going to have to act', they will just continue their charade they have been doing from day one. Look at Lyme- they (we- I have Lyme) have had the pathogen isolated for years and yet CDC and insurance backed med professors at Yale/IDSA still get away with point blank lying and screwing with the science and patients just like they do with us. Doctors even get their licenses revoked for treating with long-term antibiotics.

    That doesn't mean we should lose heart, it just means don't expect that things will change overnight and CDC will fall in line if some biomarkers are replicated again. They are fighting a war against us and the science. They are just shifting their tactics slightly. Keep fighting back. Especially we need to keep going to their bosses- Congress and the President or we will get nowhere.
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I think these are very good points!
    peggy-sue likes this.
  19. Bob

    Bob

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    Does anyone have any information on the genomic study that the CDC is supposed to be doing?
    Either I've not seen any details about it, or I've forgotten.
  20. Bob

    Bob

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    Reminder that this conference call takes place today.

    There's a separate thread about it here:
    http://forums.phoenixrising.me/index.php?threads/february-25th-pcoca-call-with-cdc.27803/


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